Many of our members with hydrocephalus experience head pain. Around 10% of people with hydrocephalus experience chronic head pain even when their shunt is working as well as it possibly can. The causes of head pain vary from person to person, for many different reasons. The different causes have different methods of managing them. Here are some of the types of head pain our members may experience.
Shunts are affected by the positions we’re in. They drain less well lying down, and more readily when we’re upright. If you find you wake up with head pain and feeling groggy, it may be that your shunt is not draining quite enough CSF overnight. Try an extra pillow, propping yourself up a little more in bed, or propping the head end of the bed up a few centimetres on small blocks, to create more of a slope for your shunt to drain.
Positions where your head is below your waist (bending over, handstands etc) will also prevent your shunt from draining and may cause headaches.
Over-drainage can cause headaches, more commonly when you have been upright for a length of time. Some people find drinking a glass of water and lying down for 15-20 minutes can help, but if it becomes a problem in day-to-day life, let your neurosurgical team know.
Strenuous exercise can lead to head pain; exercise increases blood flow to the brain, and this extra blood takes up space. This can lead to the shunt draining extra CSF and result in over-drainage headache. Build your exercise levels up over time and keep hydrated to help prevent pain on exercising.
A first or new shunt can take a while to settle down, and you might experience head pain while it does. If the pressure in your head (intracranial pressure, or ICP) was very high before the new shunt, or very long-standing, you may find you have pain while your brain adjusts to the ‘new normal’, particularly if you are over 30 years old, as the brain becomes firmer and less spongy with age. Often, programmable shunts will be fitted so the pressures can be lowered gradually, and you have headaches each time the setting is altered. Unfortunately, some people find their symptoms after a shunt revision are long term, even though the shunt is working well. Sometimes adjustments to the setting of a programmable shunt can help, but it can be impossible to get things as good as they had previously been. Chasing the ‘perfect’ setting can be frustrating, and may not achieve a pain-free life.
Chronic over drainage can lead to the collapse of the ventricles. With very little space in the ventricle for the shunt catheter, there can be cycles of symptoms of shunt malfunction and head pain, which resolve without treatment. Your neurosurgeon will inform you what action to take and when, but medication for the pain should be prescribed. Some people find medication for neuropathic pain, such as amitriptyline or gabapentin, useful.
Taking medication for headache on more than half of days, can lead to rebound headaches ie, headaches that occur when you don’t take medication. Once a vicious cycle begins, it can be difficult to do without painkillers. If you find yourself in this situation, ask for medical advice on managing your pain whilst you try to reduce or stop your medication, and seek better treatment for your underlying head pain.
Some people experience severe, debilitating head pain when the blood vessels in the brain release chemicals which cause inflammation and pain. At the moment, the causes are unclear. Sometimes it is hereditary, and some people with hydrocephalus will experience them. Alongside head pain, other neurological symptoms may develop, such as temporary paralysis on one side of the body, or altered sensation, and visual disturbances known as aura. There are numerous medications that are used to treat migraine, such as triptans and propranolol. There is no simple way to predict which treatment will work best for which person, so trying various medications, for around three months, and seeing if they help, is the most common approach. This can feel frustrating, but do bear with it, trial-and-improvement is the only way to be able to find the right type and dose of medication for you.
Here’s some useful information
A rise in carbon dioxide in the blood can cause swelling in the brain, which can lead to headaches. If your headaches are usually in the mornings, look at our information sheet on sleep apnoea
Shine have more information about Sleep apnoea.
Inflammation to the delicate meninges covering the brain can persist long after the episode of meningitis has passed. Anti-inflammatory medication, such as ibuprofen, and painkillers such as paracetamol can help. For stronger, short-term pain-relief: co-codamol (a mixture of codeine and paracetamol) can be very effective and is available over-the-counter in pharmacies. It is important not to take codeine-containing painkillers for more than three days without medical advice and support, as codeine can be addictive and can also cause constipation.
Never take ibuprofen on an empty stomach, it can cause inflammation and bleeding in the stomach.
These are typically constant pain on both sides of the head, sometimes behind the eyes. The pain can be caused by posture and muscle pain, eye-strain, tiredness, dehydration or noise. Exercise, such as yoga or pilates can be effective. Painkillers such as paracetamol or ibuprofen may also help.
During our lives, from childhood onwards, our visual acuity (how well our eyes see) can change. Regular optician’s checks can keep on top of these changes, and prescribing or changing spectacles or contact lenses will correct your vision. Left uncorrected, you may find you have blurred vision and headaches, as your eyes need to work harder to see. Sometimes this can cause concern that your shunt is malfunctioning, but a change in spectacles can help. If you use a computer, take regular ‘eye breaks’, maybe 20 seconds after every 20 minutes of use. Eye checks are particularly important for people with hydrocephalus as signs of raised intracranial pressure (ICP) can sometimes be seen by examination of the optic nerve in the back of the eye. Papilloedema is the name given to the swelling that can indicate raised ICP. If there are signs of raised pressure, it’s important that you have this investigated further to make sure your shunt is working well. It’s also important that you still get symptoms of shunt failure checked out, even if you’ve had a recent eye exam where no papilloedema was detected.
People with hydrocephalus and shunts may develop headaches when dehydrated. A large proportion of the brain is water, and ICP is not controlled within the narrow range it is without hydrocephalus. Alcohol is very dehydrating and people with hydrocephalus may be more sensitive to this effect so you may find you have a nasty hangover if you overdo things. Try spacing alcoholic drinks with juice or water in between, and drink a couple of glasses of water before bedtime after an evening drinking alcohol.
Sinuses are air spaces in the bones of the forehead and cheekbones, connected to the nose. They can become inflamed or infected, often following a cold or other virus. The pain can be severe and throbbing, and worse when bending your head down. If it recurs frequently or persists, talk to your GP, as there are treatments that can help. Sometimes referral to an Ear Nose and Throat consultant is needed.
Sometimes people with sinus-type head pain have migraine, although sinus pain is not often associated with nausea or vomiting.
Pain from infected and damaged teeth isn’t always felt at and around the affected tooth, sometimes the pain can be referred to other parts of the face and head. People who clench or grind their teeth at night may also get painful inflammation in their jaw joints (Temporomandibular joint dysfunction) and temples. It can be easy to let dental appointments slip, particularly if you have a lot of other medical appointments that seem more urgent. However, dental check-ups are an important part of your healthcare so try to make regular 6-month appointments with your dentist.